URGENT: Support CRPD, Deaf-Friendly “Disability Treaty”

WE NEED YOUR HELP!

The marathon battle for the U.S. ratification of the deaf-friendly “Disability Treaty” may soon have its end in sight. But only if thousands of supporters across the country take action now! That means YOU!

What can you do?

MAKE CALLS!! We need everyone to call and email Senators as often as you can. Tell them over and over to ratify the Convention on the Rights of Persons with Disabilities (CRPD)! Don’t stop until they ratify!

The CRPD Action Center at http://disabilitytreaty.org offers tools that can help you communicate with Senators. This includes a template email and a script for phone calls. The same site has a FAQ on the CPRD.Every call really does matter. Set up phone banks for your dorms, organizations or classes. Hold events where everyone calls together!

In addition to your own Senators, you also can call Senator Menendez and Senator Corker. As Chair and Ranking Member of the Senate Foreign Relations Committee, they represent all Americans.

The U.S. Senate Foreign Relations Committee has scheduled two hearings on the CRPD for November 5 and 12, 2013. WE NEED YOU TO COME. Bring your friends, family, and classmates. Help us FILL THE ROOM. Show the Senators your support. Monitor http://www.foreign.senate.gov/hearings/ for forthcoming details on time and location.

Facts to Remember:

The CRPD is the first international treaty to recognize the inclusion of sign language and deaf culture in society.

More than 700 disability, veterans, faith, business, and humanitarian organizations support CRPD ratification. These include the National Association of the Deaf (NAD), Gallaudet University, and the U.S. International Council on Disabilities (USICD).

More materials on the CRPD for the Deaf, deaf, and hard of hearing communities are available at http://bit.ly/DeafCRPD

Last year, we lost by only 5 votes. This may be our last chance for a long time. Please help us succeed this year!

Please let us know what you are doing! Any questions? Contact: Andrea Shettle at ashettle@usicd.org, video phone 202-540-8812. Other questions on the CRPD campaign can be directed to Eileen Magan at emagan@usicd.org.

Please circulate this text freely to all U.S. deaf and hard of hearing community members, their friends, loved ones, and allies. Reblog or copy/paste the text into email, Facebook, etc.

If you care about social justice, equality, and human rights for all people … if you are an American veteran or a person with disabilities or love someone who is … then please take action in the campaign for US ratification of the disability treaty. Ask your US senators to vote YES to ratify the CRPD Disability Treaty in 2013.

This may sound like something that shouldn’t need your help. Because, who would be against people with disabilities? But we lost our first attempt to get the CRPD ratified in the US in December 2012 due to a campaign of mis-information from opponents. And the opponents have not stopped. We cannot allow this defeat to happen again. The disability, veterans, faith, business, and social justice communities have come back in 2013. More than 500 organizations across the US are working hard on US ratification of the CRPD. But we need your help in talking with your senators to make it happen.

The slide show below gives a brief overview of the Convention on the Rights of Persons with Disabilities (CRPD, also known as the “disability treaty”). It covers:

What the CRPD is,

Why it matters to people with disabilities around the world,

Why US ratification is important even though we already have the Americans with Disabilities Act, and

Also visit a great website that has more extensive materials on the CRPD disability treaty and the campaign for US ratification at http://www.disabilitytreaty.org. This includes materials and resources for advocates, such as fact sheets that expose some of the myths and mis-information being disseminated by treaty opponents.

If you have 48 minutes to spare to learn more about the CRPD and the history of the campaign for US ratification, watch this great new webinar video at http://www.youtube.com/watch?v=r4LHXZyHERU&feature=youtu.be. Yes, it has captions for deaf and hard of hearing people (and others who need them).

Call to Action: Tell FDA to End Use of Electro Shock Devices at JRC!

The following text comes from Nancy Weiss, Director of the National Leadership Consortium on Developmental Disabilities. She gave me permission to share this text via Facebook and blog. Please take action in writing letters to the FDA, and then share with others in your network. Nancy invites people to cc your emails to her (nancy-weiss@comcast.net) so she and other lead advocates on this issue can keep track of correspondence being sent to the FDA.

The effort to have the FDA disallow the use of electric shock devices at the Judge Rotenberg Center is in jeopardy. We are at a turning point — we need you to write a letter and to pass this request on to others who are concerned about this issue.

It seems the FDA has gotten dozens of letters from parents whose sons or daughters are at the Judge Rotenberg Center and who want JRC to be able to continue to use painful electric shock to control behavior. The FDA is being swayed by these letters. Those who sent letters are not bad parents – but they are people who have found few other options for their loved ones, have made the difficult decision to send their family member to a place like JRC and who need to feel (and convince others) that they have done the right thing. It is clear from many JRC parents that they had no idea about some of the devastating things that were happening to their loved ones at JRC until much later. A letter from a former student is attached.

We need people to write letters to the FDA. A template for a letter is attached; feel free to use it or to use parts of it — but the strongest letters will be those written from the heart. Letters can be signed by individuals or organizations.

LETTERS FROM ANYONE WHO CARES ABOUT THIS ISSUE ARE GREAT; LETTERS ARE NEEDED ESPECIALLY:

— From parents or family members who have loved ones whose behaviors are just as severe as those of people at JRC but whose family member has been treated/supported successfully with humane approaches. If you have a family member whose behaviors are very challenging, please write!

If you know someone who has a family member who could have ended up at a place like JRC and who may be willing to write a letter to protect people with disabilities from the unspeakable approaches used at JRC, please forward this request.

— From organizations that serve people whose behaviors are just as severe as those of people sent to JRC – or even people who have been at JRC. Do you support people with tough behaviors using positive approaches? Please write about the kinds of people you support and the effectiveness of your approaches. Let the FDA know that pain should not be a part of an effective behavioral approach. Please forward this request if you know people from other agencies that serve people with challenging behaviors.

There are currently about 240 children and adults at JRC …. they represent only a fraction of the many, many people across the country who have challenging behaviors. We need the FDA to understand that it is neither acceptable nor necessary to use pain to control behavior.

You are welcome to copy Nancy Weiss (nancy-weiss@comcast.net) so she and fellow lead advocates can maintain a file of the letters sent to the FDA.

Thank you for your continued concern about this issue. The letter from the former student (attached) has touched people’s souls and galvanized this effort in ways that are unprecedented. Please help to end these atrocities once and for all.

Sample Letter to FDA

What follows below is a sample letter to the FDA on the issue of the use of electric shock at Judge Rotenberg for you to crib from in composing your own letter/email. (The letter from a former student of Judge Rotenberg follows further below.)

We are writing to express our appreciation for the FDA’s action in issuing the warning letter above, regarding the use of dangerous, adulterated devices, known as the GED-3A and GED-4. We also urge your agency to move swiftly to prohibit, and if necessary, seize these unsafe and ineffective devices which are neither cleared nor approved by the FDA.

The GED-3A and GED-4 are used to administer electric shocks on children and adults with disabilities under the behavior modification regimen of the Judge Rotenberg Center (JRC) in Canton, Massachusetts. Aversives – the use of pain as a means of behavior modification – are an inherently unsafe, antiquated and unsupported type of treatment for individuals with developmental disabilities or other persons with behavioral challenges.

Safety.

According to documents referenced on the JRC’s own website, the GED administers a skin shock, via electrodes attached to the skin with a maximum current of 45.0 milliamperes RMS, with an average peak of 91 milliamperes and a maximum duration of 2 seconds. JRC residents may wear from one to five GED sets at once (each on consisting of a battery, shock generator and associated electrode). The GED administers a substantially greater shock than either a cattle prod or a dog collar.

Shocks administered by the GED-4 are extremely painful and have burned the skin and subjected JRC residents to emotional trauma and risk of further physical harm.[1] Moreover, with electric shocks are administered by low wage direct support staff, JRC residents are subjected to misfirings and misuse of the GED. For example, for a news video about a prank phone call which resulted in 29 shocks to one student and 77 shocks to another, with first degree burns resulting, see http://www.youtube.com/watch?v=-aUIhWmDPeI. To watch a video released in court in 2012 of a teenager with autism being shocked with the GED-1, seehttp://www.youtube.com/watch?v=ssc8mUqUEqE.

As one former JRC resident wrote in a letter to the FDA:

The GED IS harmful. Even the GED-1. I was burned many times, and I still have scars on my stomach from being repeatedly shocked there, by the FDA approved GED-1. The electrodes had actually burned into my skin. I experienced long term loss of sensation and numbness in my lower left leg, after getting a shock there. I felt searing pain all the way down to the bottom of my foot, and was left with no feeling in my skin from the knee down for about a year. Again, this was with the GED-1. After complaining to JRC nursing about my leg, they told me to tell the Neurologist about it during a follow up visit for a suspected seizure. He asked the staff what that device was on my leg, and they explained to him it was an electrode. After their explanation, the Neurologist said, “Well, I don’t know what that thing is, but it needs to come off.” JRC left the device off my leg for about a year, then decided on their own, without sending me back to a Neurologist, it was ok to put it back. I have seen students with torso electrodes accidentally placed on their spine area, get a shock there and be violently bent backwards.

Also, I would like you to know that the devices have a tendency to malfunction and go off all by themselves. JRC refers to this as a “misapplication”. It happened to me and other students so many times I cannot count. Sometimes the GED’s will just start to go off and shock you by themselves. Other times the staff shock one student but the remote can also set off someone else’s device at the same time. I have also gotten accidentally shocked from staff mixing up my device with another student’s device, shocking me instead. Then there are the times when staff intentionally misuse the GED. I have had a staff who became angry with me and started pushing more than one remote at a time, shocking me several places on my body at once. I have had staff intentionally give me shocks for things I didn’t do in places like the bus where there was no camera to prove it. I have had numerous staff over my years there threaten me with a GED, antagonize me to try and get me to have a behavior they can then shock me for, merely for the sport of it. Staff can and DO use the GED to scare non-verbal students into doing what they want them to by pretending they are about to shock them. Some even laugh when they do this.

…

Besides the physical pain, life with GED’s is a life of constant anxiety. I experienced heart palpitations daily, had a very hard time sleeping and eating, and became rather paranoid, always wondering if I was about to get shocked and constantly alert in all directions. I eventually became very depressed there and contemplated suicide every night. Now, after having been gone almost 4 years, I am still having nightmares and flashbacks during the day, especially when I hear certain noises that remind me of GED’s and JRC.

Effectiveness:

There is an overwhelming amount of clinical literature and lived experience to demonstrate that skin shock is not only dangerous, unsafe, cruel and inhumane, but it is also ineffective. Nationwide, the entire field has shifted markedly away from aversives towards other methods of treating serious behavioral challenges, including positive behavioral supports. JRC is the only school remaining of its type clinging to this antiquated approach, and children and adults with comparable behavioral challenges have had great success, across the country, in other types of programs, either in lieu receiving aversives at JRC, or after leaving that facility.

Legal Status of the GED 3A and GED 4:

As explained in your December 6, 2012 warning letter to the Judge Rotenberg Center, the most recent versions of the GED, the GED-3A and the GED-4 are adulterated devices which have received neither the approval nor clearance from the FDA. In 1994, the FDA did clear the

GED-1 as being substantially equivalent to a predicate device, the SIBIS. However, thereafter, JRC substantially increased the strength of the GED, creating the new versions GED -3A and GED-4. Not only did JRC begin using these devices without seeking FDA clearance, but they also publicly misrepresented that these devices had FDA approval. See May 18, 2012 Anderson Cooper videohttp://www.youtube.com/watch?v=egZP2SK3R5Q showing (at 1:18) JRC website misrepresentation that the device was FDA approved, and explaining (at 1:53) that the FDA notified JRC in 2010 that the GED-3A and GED-4 were not cleared, with JRC continuing to use these devices nonetheless.

Requested Action:

We ask the FDA take the following action:

• Seize these unsafe devices which are neither approved nor cleared;

• Deny any request for clearance, should a 501(k) premarket notification submission be given to the FDA for the GED-3A and GED-4;

• Deny any request for premarket approval for the GED-3A and GED-4, should such request be submitted;

• Revoke its 1994 decision to clear the GED-1, given the overwhelming evidence that this device is unsafe and ineffective, and the significant differences in the strength of this device and its predicate, the SIBIS.

Thank you for your consideration of our request.

Sincerely,

[1] As one former JRC Teacher’s Assistant wrote in a letter to the FDA, “I can testify to seeing bloody and crusty scabs all over student arms, legs, and torso, on numerous students, caused mostly by the GED-4, which was most evident when helping certain nonverbal students to sponge-bathe at school, called ‘self-care’.”

Letter from Former Resident at Judge Rotenberg Center

The following letter was written by a former student at the Judge Rotenberg Center about her experiences with electroshock “treatment”.

The following letter was sent to Nancy Weiss, Director of the National Leadership Consortium on Developmental Disabilities at the University of Delaware on January 11, 2013. Ms. Weiss assured the author that she would protect the writer’s anonymity. Ms. Weiss can pass messages to the author. Ms Weiss can be contacted as below:

Hello my name is xxx. I was told you are someone I can talk to in confidence and be safe. I would like to share with you my letter that I wrote to the FDA about life inside JRC and on the GEDs. It was torture being there. And I suffered so much. I am still tormented. Here is my letter of testimony:

My name is xxx and I attended the Judge Rotenberg Center. I am writing to ask you to please reconsider your approval of the GED for use on ANY human being. I was placed on the GED about 2 months after arriving. I started out on the GED-1, and during my last few years I was placed on the GED-4. There are so many of us that were tortured with these devices, this “treatment”. I believe the reason why more ex-students haven’t spoken out is because they are either non-verbal, afraid, or believe that no one cares about us or it will not make a difference. Parents and families that speak and rally in favor of the GED, are not the ones who have to experience it, the pain and anxiety, day after day for years on end.

The GED IS harmful. Even the GED-1. I was burned many times, and I still have scars on my stomach from being repeatedly shocked there, by the FDA approved GED-1. The electrodes had actually burned into my skin. I experienced long term loss of sensation and numbness in my lower left leg, after getting a shock there. I felt searing pain all the way down to the bottom of my foot, and was left with no feeling in my skin from the knee down for about a year. Again, this was with the GED-1. After complaining to JRC nursing about my leg, they told me to tell the Neurologist about it during a follow up visit for a suspected seizure. He asked the staff what that device was on my leg, and they explained to him it was an electrode. After their explanation, the Neurologist said, “Well, I don’t know what that thing is, but it needs to come off.” JRC left the device off my leg for about a year, then decided on their own, without sending me back to a Neurologist, it was ok to put it back. I have seen students with torso electrodes accidentally placed on their spine area, get a shock there and be violently bent backwards.

Also, I would like you to know that the devices have a tendency to malfunction and go off all by themselves. JRC refers to this as a “misapplication”. It happened to me and other students so many times I cannot count. Sometimes the GED’s will just start to go off and shock you by themselves. Other times the staff shock one student but the remote can also set off someone else’s device at the same time. I have also gotten accidentally shocked from staff mixing up my device with another student’s device, shocking me instead. Then there are the times when staff intentionally misuse the GED. I have had a staff who became angry with me and started pushing more than one remote at a time, shocking me several places on my body at once. I have had staff intentionally give me shocks for things I didn’t do in places like the bus where there was no camera to prove it. I have had numerous staff over my years there threaten me with a GED, antagonize me to try and get me to have a behavior they can then shock me for, merely for the sport of it. Staff can and DO use the GED to scare non-verbal students into doing what they want them to by pretending they are about to shock them. Some even laugh when they do this.

Many of the things I and others get shocked for at JRC were very small things. They would often shock us for things simply because staff found them annoying and they would keep writing therapy notes until our psychologist added it to our program. I got shocked for tic like body movements, for which I have no control over, and which don’t hurt me or anybody else. I would be shocked for waving my hand in front of my face for more than 5 seconds, for closing my ears with my fingers, which I do when things get too loud, because I cannot tolerate too much noise. I would be shocked for wrapping my foot around the leg of my chair, for tensing up my body or my fingers, and the list goes on and on. There was a period of time where I and many of the other students were getting shocked for having 5 verbal behaviors in an hour. A verbal behavior is a minor behavior like talking to yourself, noises (such as clearing your throat), or talking without permission. Every hour would start a new block. And if you were pinpointed more than 4 times in that hour, on the 5th you would get a shock, and then for EVERY minor verbal behavior after that you would be shocked. If you talked out a 6th time, shock. If you had to go to the bathroom, and you had to go really bad, but you asked more then once, that would be nagging, which is a verbal behavior. And these were the things we were getting shocked for. My program was this way for a while. Some of my verbal behaviors I got pinpointed for were crying, talking to myself (even quietly), noises, laughing, humming, repeating myself and inappropriate tone of voice (which was based on staff’s opinion of how my voice should sound). Almost every time I spoke or answered a question, I was pinpointed with these behaviors. My reaction was to stop speaking, but they also made part of my program that if I didn’t answer staff in 5 seconds, I would automatically be shocked. I was paralyzed with fear every day. No matter what I did I was doomed. I ask those who read my letter to think to themselves about how often they do some of these things while they are working. Twirl their pens, talk to yourself or think out loud, ask a question to someone nearby, hum a song that’s in your head, laugh at something funny in the room. These are things humans do. And they are not harmful. Yet we were being subjected to terrible pain and fear for doing these simple things. One day, out of the blue, the case managers went through the building and scratched off this punishment from all their students recording sheets. They didn’t say anything to us about it, just made it like it never happened. Although I can’t say for sure, I overheard talk that one of the male students had told his lawyer and family they were shocking him for talking, and that JRC was never supposed to be allowed to do that to us. Whatever the reason, they covered it up fast. And even though they stopped, they still need to be held accountable for all of it. Because it went on for a very long time, and I suffered greatly because of it. People NEED to know these things happened.

There was a time when I was there that I was on the portion program. This is where JRC starves you as a punishment for having a behavior. For example, my first plan was that for every time I had a minor behavior, such as talking to myself, rocking, wiggling my fingers, I would lose a part of my next meal. My meals came to the classroom cut into tiny pieces and divided into portions inside of a little plastic cup. Every time I had one of these little behaviors, I was forced to stand up and throw one cup away. There were many days I would lose most of my meals. And the hungrier I got, the more frantic and restless my body became. This caused me to have more behaviors like tics and rocking, and in turn I would lose more food. My mind clouded and I could no longer concentrate. I would often become so frustrated from this I would end up hurting myself. At the end of the day, at 7pm, I was offered “LOP” (loss of privilege) food. This was made intentionally to be completely unappetizing. It was ice cold, and it was made up of chicken chunks, mash potato, spinach, and then doused with liver powder, then set to sit in the refrigerator for days. The smell alone made me sick. And I never once was able to eat it, no matter how hungry I got.

It was very difficult to sleep at JRC. There are several alarms in the room and over the bed. Every time someone moved in bed it would set a loud alarm off that could be heard throughout the house. Most of us on GED’s had to sleep with the devices on. That means locks and straps that get all tangled around you and make it very hard to lay down in a comfortable way. I was very anxious to close my eyes, always fearing a shock for something I might not have even known I did. My fears came true one day, and I was given a GED-4 shock while I was asleep. It was not explained to me why I got this shock. I was terrified and angry. I was crying. I kept asking why? And they kept telling me “No talking out”. After a few minutes Monitoring called, and told the staff to shock me again for “Loud, repetitive, disruptive talking out.” The next day I asked the supervisor why I had gotten that GED. And she explained that staff had found a small piece of plastic in my self-care box, which contained my shampoo bottles etc, and that they considered this a hidden weapon. I could not believe it. I did not hide anything in my self-care box. I had not done anything wrong. Yet I was shocked for it, and worse off in my sleep. That piece of plastic, of which I was never shown, had probably broken off of one of the plastic containers inside the box. And I was severely punished for this. After this incident I really stopped sleeping. Every time I closed my eyes they would jump open, anticipating that jolt somewhere in my body.

I truly believe that the judges that approve us for the GED have no idea what it really is like. All they have to go on is what JRC claims. The GED does not feel like a “hard pinch” or a “bee sting.” It is a horrible pain that causes your muscles to contract very hard, leaving you sore afterward. I would often have a limp for one or two days after receiving a GED. The devices JRC puts on us are not the same ones they show to the outside world when they let outsiders try the GED. Students wear a different electrode, a long one with 2 metal electrodes that radiate the electricity across a large area.

Besides the physical pain, life with GEDs is a life of constant anxiety. I experienced heart palpitations daily, had a very hard time sleeping and eating, and became rather paranoid, always wondering if I was about to get shocked and constantly alert in all directions. I eventually became very depressed there and contemplated suicide every night. Now, after having been gone almost 4 years, I am still having nightmares and flashbacks during the day, especially when I hear certain noises that remind me of GEDs and JRC.

I want to mention, similar to many other students, I was also tied to the 4-point restraint board and given multiple shocks for a single behavior. And if I screamed out in fear while on the board, I would be shocked for that as well. I was shocked for behaviors I had no control over, such as tensing up and tic-like body movements. We were always having to watch others getting shocked in the room. Hearing others scream, cry, beg to not be shocked. Students would scream “I’m sorry, No, Please!!” all day. I, like other students, would cringe and feel sick and helpless while watching others getting shocked. I was so anxious about getting shocked that I would many times bang my head just to get it over with. The GED often was the cause of my behavior problems. The students that get shocked the most at JRC are non-verbal. So they cannot speak up. I feel that just because we were born different, we are not given the same rights to be protected from tortures like the GED.

We are at the mercy of guardians and judges. When I was brought to court to be approved for the GED, I was not told where we were going or why. I was brought into the courtroom wearing a helmet and restraints on my wrists and ankles. I was not questioned by the judge. All he had to go on was my appearance in those restraints, testimony from JRC officials, and charts of provoked behaviors. These behaviors came from being forced to sit in isolation with a straight upright posture, in the center of a hard restraint board, day after day, week after week, for two months. I received no real help and no socialization. For those two months I was not allowed to sit in a chair, at the classroom or residence. I was to sit on the board. Also, JRC provoked me by not allowing me to shower during those two months. Instead of showers, I was bathed tied to a restraint board, naked, while staff washed me, putting their hands all over me. All in front of cameras, where Monitoring watched, including men. Being tied on a restraint board, naked, with my private areas exposed to the staff in the bathroom and the cameras was the most horrible, vulnerable, frightening experience for me. I would scream out “rape, rape!” And these were recorded as major behaviors for me. When I first arrived at JRC, I was immediately subjected to humiliation and provocation by them forcing me to wear a diaper. I in NO WAY needed or have ever needed a diaper as an adult. I am completely independent in all toilet and hygiene skills. And they knew that. I had NEVER worn a diaper up until that day, except of course when I was a little baby. And that is exactly how they made me feel, like a little baby. I was embarrassed and confused and angry. I took that diaper off constantly. When I would take the diaper off they would mark that down on my chart that they would later show the judge as destructive behavior. I would often get restrained on the 4 point board for taking off the diaper and fighting staff not to make me put it back on. In these ways and more, JRC provoked many behaviors in me that were shown on a chart to the judge. There is no way the judge could know what was provoking my behaviors. JRC told the judges that their program was the only thing that could help me. That theirs is the only last resort treatment.

I was considered a difficult case. I would like you to know that I am doing very well in a new program that is nothing like JRC. I don’t get shocked or put in restraints, and I am given help by staff and doctors that I can talk to. I am not drugged up as JRC claims I would be if I left. JRC made no attempt to understand me. Feelings do not matter to JRC and we were specifically not allowed to express them. I felt like an animal test subject there. My new program does not punish me for my problems, that are the result of having Aspergers Syndrome. I have gotten so much better from getting real help instead of constant punishment and pain.

I ask you to please investigate carefully into the GED. The ones that are actually being used on the students, not the samples JRC provides, as I have experienced them to be extremely manipulative in all things. There are no doctors overseeing us with the GED. Every few years they would drive me to a doctors office near Framingham, Ma, and not tell me why. In his office he would literally walk in, say hi how are you, and before you can answer he has signed their papers and you are shown the door.

I have attached with this email a document I wrote called “The Board” which is about one of JRC’s worst tortures that they used on me and others. I wrote it so that outsiders can feel what we feel, and hopefully to help others understand the agony of GED treatment. I invite you to read it, and I hope it will share a new perspective for you, the perspective of the ones that should matter the most, the human beings on which these devices are being used.

Sincerely,

xxx

————————————————————————————————————

The Board

By: xxx

December 2012

The most sickening, horrifying experience of my life was being shocked on the restraint board. What is the board? It is a large, door sized contraption made out of hard plastic, with locking restraint cuffs on each corner where your wrists and ankles get locked in. Your body becomes stretched spread eagle style, pinned tight, rendering you completely helpless, combined with an overwhelming feeling of vulnerability. It is a torture that you would expect to see in a horror movie. The kind that makes you cringe and scream while you watch. The kind you cant get out of your head even a after it’s over. Only this was happening for real, to me.

They added the restraint board, which for me was 5 shocks over 10 minutes to my program after a few months, which means getting shocked 5 different times, over a period of 10 minutes for having just one single behavior. If you have just one of those behaviors on your sheet, which can be getting out of your seat without permission (even without doing anything violent), tensing your body, anything they decide to put in your program. A behavior is anything you do that JRC considers a problem. Anything from hitting your head, to talking to yourself, saying a swear word, rocking, even screaming from fear and pain of the shocks, is a “behavior”. The staff grab you, put you in restraints, walk or drag you to where the board is kept (usually right in the middle of the classroom with all the other students watching and stepping around you), and than restrain you to the board. Arms and legs locked in. Then the terror starts. You have to wait for it. You never know when it’s coming. The staff shocking you usually hides behind a door or desk so you can not see them. JRC lavishes in the element of surprise when shocking us. Then all of a sudden the searing pain and jolt in your arm or leg or stomach, or sometimes even the fingertips or thigh or even bottom of your feet. Whichever part of the body gets shocked, it will travel throughout. If you get shocked in your arm, for example, it is not a “hard pinch” it is a radiating electricity that will travel from your bicep through to your fingertips. Your whole arm jerks against the restraints, causing added pain from your muscles being forced to contract against being tied up. The loud screech of the device goes off with it, and they say, “(name) there is no tensing up”. One down, 4 to go. Your heart races immediately, and you sweat profusely. All you want to do is throw up. That ten minutes feels like hours. You try to prepare yourself for the next shock. I keep saying in my head, 4 more, 4 more. Please just finish please. Trying not to scream in fear because i will be shocked for that as well. It comes again without warning, next time maybe in your stomach, the stabbing pain runs from left to right, right to left, across your belly button area. Your stomach heaves in and you lose your breath. More sweat now. Your heart beats faster now than you can feel possible. I start to hope my heart stops. Anything to let me away from this. 3 more. But now it’s even harder, I don’t feel I can take any more of this torture. Besides the pain, it’s the panic and fear in your mind. There were times when I peed on myself. One particular time I was put on the board for hitting my head the night before. They said because the staff did not “follow my program”. They put me on the board. They shocked me repeatedly in the stomach. And when they finally got to 5, I thought “it’s over”. But then they didn’t take me off the board. They gave me a 6th, than 7th, than 8th. They kept going. I was so filled with fear, not knowing what was happening or when they would ever stop. I went away in my head. I started floating. I had no more tears left. When they finally stopped after 10, they sent other staff in to “change my batteries”. When they lifted the electrodes off of my stomach, it was stuck. They had to pull because it had burned into my skin. I still have those scars on my stomach. When they took the devices off of me to test them, I was still strapped to the board. Every time I heard the noise from the test, I cried and panicked. The staff attempted to comfort me, she whispered to me so they wouldn’t hear her, because any kind of comforting is never allowed. I was shocked on the board on many separate occasions. One time for something I never even did.

I lived this. These things happened. These things were done to me and I witnessed them done to many others.

UPDATE January 15, 2013: Yes, we lost the vote in December. NO, the fight is NOT OVER. The senate WILL have another vote on the ratification of the Convention on the Rights of Persons with Disabilities in 2013! Don’t allow the opposition to use their continuing lies to defeat us a second time–make sure your senators know you strongly support their “yes” vote on the CRPD.

Call, email, write, tweet to, or visit the offices of your senators early and OFTEN. (Senators have short attention spans 🙂 ) Find more info on the US CRPD ratification campaign and what to tell senators; find contact information for your senators at senate.gov.

Please act quickly and do your part to make this a WIN for the disability community around the world. Let’s not look back and think of what we should have done but what we DID do!

Time is running out. This Tuesday, December 4th at 12PM the CRPD with be voted on.

We have all worked years to come to this point. Over 300 disability and veterans organizations and thousands of disability advocates have weighed in and worked tirelessly to get a vote on the CRPD in the Senate. But a small and LOUD opposition led by Rick Santorum and the Tea Party is using their misinformation to take the votes that we have all worked so hard to secure. The Senators opposed to our treaty have agreed to a vote without amendments – because they think the disability community will NOT win.

We are DOWN the votes we need but the disability community SHOULD NOT AND DOES NOT GIVE UP!

Can we count on you? Will your Senators be a “YES” vote? We need 67 VOTES to win and this will be a VERY close vote. WE NEED YOUR STATE!

At this point only an ACTION by you in your STATE will get us a positive REACTION in the Senate. Make your support known in the press, in the media, in your Senator’s offices. Call, Tweet with #CRPD, sit in, whatever works for you BUT doing nothing will not get us anything.

We need action all weekend and on Monday, the International Day of People with Disabilities.

1. Educate yourself about the CRPD!

The acronym CRPD stands for “Convention on the Rights of Persons with Disabilities”. It is an international treaty defending the human rights of people with disabilities ratified by 127 countries—but not the US. We’re working to fix that!

2. Talk to Senators!

Visit http://www.senate.gov to find the website for each of your two senators. The website will have their contact information. Email them, call them, tweet them, or leave messages at their Facebook page! In twitter, use the hashtag #CRPD

Your message for senators: “I am a person with disabilities–please ratify the CRPD in 2012! This is an important issue for the disability community!” If desired, you can say what your disabilities are. Or say that you know someone with disabilities, or that you are a US veteran, etc. Visit USICD’s website for more sample CRPD messages for senators.

3. Lend your Face!

Let senators see the many faces of people who support the CRPD! Take a picture of you holding your own homemade sign supporting the CRPD. Individuals, couples, or groups are all welcome! Look at more pictures for ideas.

You can make your sign with poster board or a blank piece of paper. Use magic markers, or your printer.

Send the picture to Susie Richard srichard@usicd.org at USICD for their growing collection! Ask your friends and relatives to contribute pictures also!

If you have Twitter, you can tweet pictures to senators with the #CRPD hashtag.

4. Recruit your Friends and Family!

Educate your friends and family about the CRPD. Ask them to call, email, or tweet their senators–and contribute pictures!

5. What Can YOUR Organization Do?

Consider sending your own letter to senators explaining why your organization wants the US to ratify. (Read letters of support from other organizations). Send a PDF copy to Susie Richard so she can post it to USICD’s website.

What is the CRPD?

CRPD stands for Convention on the Rights of Persons with Disabilities, the first international treaty to address the human rights needs of people with disabilities. We lost the first CRPD vote in 2012 because the opposition spread lies and misinformation. Don’t let us lose again in 2014. Senator Reid could schedule a new floor vote on the CRPD at any time that the Senate is in session.

Need ideas for a message to accompany your picture? Click on some of the pictures below to see what message people tweeted with their picture! Always include the #CRPD hash tag AND the http://disabilitytreaty.org web link.

Today is the 10th anniversary of the terrorist attacks that killed about 3000 people at the World Trade Center in New York, at the Pentagon in Arlington, Virginia, and in a field in Pennsylvania, as well as the passengers on the four planes used as weapons of terror. But what most people don’t realize is that a very high portion of the people who died that day were people with disabilities. And this isn’t because they were targeted by terrorists, or because people didn’t bother trying to rescue them. This is because the most typical disaster preparedness plan put in place for people with disabilities usually involves some variant of: Come to location X near the stairs, then sit and wait for rescue. The only problem is, sometimes an emergency moves so fast that there is simply no time for rescue to arrive. And when that happens, people with disabilities are often the first to die because they are the last to be evacuated.

Let me share with you one of the most amazing music videos you’ll ever see! I have met the women in this video–both the Deaf women and the women with all different kinds of disabilities–and they are some of the most awesome, passionate, visionary, world changing women leaders I have had the honor to have met. These 54 women from 43 different countries are doing incredible things in their home countries, changing society one little corner at a time so that it is more inclusive of Deaf and disabled women everywhere. Please, PLEASE — go watch this video!! Then when you’re done–please get a YouTube account (if you don’t already have one) so you can leave a positive comment about it. And click on the “like” button (looks like a thumbs up sign). Then click on the “Share” button so that you can tweet it … and facebook it … and otherwise share it with every person you know. Then encourage them to do the same thing. I want for the WHOLE WORLD to watch this video!

Can you feel their love and passion and energy just pulsating off the screen at you? I came home with an AWFUL headache tonight and just wanted to go to sleep … but when I watched this video, it had me tapping my toes and signing and singing right along with them! You will do the same — PLEASE GO WATCH RIGHT NOW!

The song is sung in English, Arabic, Spanish, and American Sign Language with English captions.

Disabled women activists change the world through YouTube music video: Loud, Proud and Passionate!(SM)

January 6, 2011 – Signing and singing with passion in Arabic, Spanish and English, 54 disabled women activists from 43 countries celebrate the achievements, pride and solidarity of women with disabilities around the world. These leaders are revolutionizing the status of women and girls worldwide. Filmed during MIUSA’s 5th International Women’s Institute on Leadership and Disability (WILD), the Loud, Proud and Passionate!(SM) music video release marks the beginning of MIUSA’s 30thAnniversary year-long celebration.

Our goal is to reach 2,500 views and to raise funds through donations for the next WILD program empowering women and girls with disabilities. Every donation large or small brings us closer to that goal! To donate, visit http://www.miusa.org/donate/wild.

The video is captioned. For the text video description in English click here.

Mobility International USA (MIUSA) is a non-profit organization whose mission is to empower people with disabilities around the world to achieve their human rights through international exchange and international development. For more information visit www.miusa.org.

Yes, the following message below from Tony Coelho very much applies to the culturally Deaf community, also. The original Americans with Disabilities Act, of course, helped give Deaf Americans better access to land line telephones via the TTY relay service (20 years ago) and the video relay service (today). The Convention on the Rights of Persons with Disabilities, among other issues, protects the right of Deaf people and people with disabilities to have access to information and communication. It specifically refers to signed languages in several different articles. More information about the CRPD, including its full text, is at http://www.un.org/disabilities. For information on CRPD ratification efforts in the US, please visit http://www.usicd.org.

A Message from the Honorable Tony Coelho on the Occasion of the ADA’s 20th Birthday

On this 20th anniversary of the Americans with Disabilities Act, we have much to be proud of as a community. A little more than twenty years ago, we embarked on a historic journey in advancing civil rights for Americans with disabilities. We came together with one voice, putting aside our political and other differences, to work toward this cause, and we were joined by our partners in Congress, who put aside their differences to do the same. And this unity and bipartisan spirit both within our community and in Congress led to our success. We could not fully imagine then the profound impact our civil rights struggle and work to pass the ADA would have for people with disabilities around the world. Today, inspired by the ADA, our brothers and sisters in scores of countries have worked to pass their own pioneering legislation to protect and promote their inherent human and civil rights.

What’s more, the world community came together at the United Nations at the start of this century and did something that is changing the world. They worked to create international law recognizing, protecting, and promoting the rights of all people with disabilities-the Convention on the Rights of Persons with Disabilities. Americans with disabilities joined them in this effort, sharing our experience with the ADA to strengthen the provisions of this human rights legislation. The disability rights movement now encompasses a global community.

But our work to strengthen and implement the promise of equal rights for people with disabilities at home and abroad remains unfinished. We have no doubt created a pillar of domestic law, but we must now work to ensure that the United States remains a global leader in the disability rights arena by ratifying the Convention on the Rights of Persons with Disabilities, which President Obama signed last July. Ratifying this landmark treaty will not only advance the promise of the ADA at home, it will give the disability rights movement a new vigor abroad with the clear message that the United States affirms the inherent dignity and human rights of all people with disabilities.

I am excited by the energy and enthusiasm of USICD in working toward CRPD ratification. I want to thank USICD President, Marca Bristo, and our Executive Director, David Morrissey, for their leadership in this effort. I ask you to join with me in supporting USICD in the important effort of making CRPD ratification in the United States a reality. When the Obama Administration completes its review and submits the CRPD to the U.S. Senate for its consent for ratification, we must come together as the American disability community and proclaim “Yes to Ratification.” Today, 88 countries have already ratified the CRPD. By joining in this community, we can share our great expertise and leadership in furtherance of the democratic values enshrined in the CRPD. The CRPD is good for people with disabilities, good for America, and good for the world.

Let us take this opportunity to deliver our unified message to the U.S. Senate. Please sign on to a letter prepared by USICD to Senators Kerry and Lugar of the Senate Foreign Relations Committee to indicate your support for the CRPD. Please follow this link to sign on.

Calling all Writers for the RatifyNow CRPD Blog Swarm 2008!
Are you good with words? Do you care about protecting the human rights of Deaf people or people with disabilities? Are you looking for a way to celebrate the first anniversary of the international disability rights treaty, called the Convention on the Rights of Persons with Disabilities (CRPD), on March 30, 2008? (Which, YES, covers Deaf, deaf, and hard of hearing people too!)

Please participate in the RatifyNow CRPD Blog Swarm 2008!

What’s a Blog Swarm?
A blog swarm is when many bloggers agree to write blog posts on the same theme at about the same time. Writers who don’t have a blog can ask someone who does to publish their post for them. A blog swarm can increase public awareness of an issue.

I would love to see strong participation from the Deaf community for this blog swarm, including both written English blogs and also signed vlogs.

If you make a vlog, please try to provide either captions or a transcript. Why? Because people from all around the world may be reading the RatifyNow CRPD Blog Swarm 2008–including Deaf people from other countries who won’t know your signed language and blind people who cannot watch videos.

Why Celebrate the CRPD?
Does it make you angry when Deaf people, or other people with disabilities, are denied equal access to educational opportunities or good quality healthcare? Does it make you sad when Deaf children are denied the right to full communication access to their environment? Does it horrify you when Deaf or disabled people are left behind during times of natural disasters and war? Does reading about the abuse and torture of people with disabilities make you want to do something about it? These are all human rights violations.

When countries ratify the international disability rights treaty (CRPD), this obligates them to create laws to protect the human rights of people with disabilities. With these laws in place, the disability communities of ratifying countries will be in a stronger position to advocate for themselves—and be heard. That’s worth celebrating.

So, What’s the RatifyNow CRPD Blog Swarm 2008?
Writers are being asked to submit blog posts about the CRPD via email to RatifyNow@gmail.com at any time between now and March 27, 2008. If you don’t have a blog, we’ll try to find a home for your blog post.

For more details about the CRPD and the celebratory blog swarm, please follow the link to:

Then What Happens?
On March 30, 2008, come to http://www.RatifyNow.org to start reading what all the participating writers and bloggers say about the CRPD!

What Else?
Please help make the RatifyNow CRPD Blog Swarm 2008 a success by making sure people know about it! You may post this notice at your blog or other web site, or pass it along to people you know.